disabled

I got the blood tests done today. I googled "hair loss blood tests" and wrote a list of them all. I gave the list to the nurse, well phlebotomist. They actually now have a dedicated phlebotomist at the surgery which is a new development. They've just started doing it by computer now. You used to get a paper form for blood tests and the doctor who ordered them would tick each box they wanted you to be tested for. But now they have to click each one on a screen. She hadn't heard of some of these tests and was having trouble finding them on the screen. I started to worry that maybe google was wrong, maybe these tests aren't real and I would get caught out.

She asked "Who ordered these?" I said, "The endocrinologist." She said "I can't see anything about that on the computer." I tried to think of an excuse for that and said, "Oh, uh....um...I...it was a follow up phone appointment. They just told me to get these done before my next face to face appointment." That seemed to make sense to her and she accepted it and eventually managed to find the tests on the computer and did them. I guess the endo will wonder what's going on and why they're sending all of these random test results over.

This is the deviousness and subterfuge you have to go through to get medical help in this country.

I hate how difficult it is to get a GP appointment in the UK. As I mentioned in a previous post, a few days ago I woke up to find a small bald patch right at the front of my hair. Today there is another one. I'm also having trouble treating the infection that has spread to my hands, the usual ointment isn't working. So I want to see a GP. They have a new automated system that is so convoluted you need to be an IT expert to ask for an appointment on it. I can't get it to work so I had no choice but to actually go there first thing in the morning and queue up with all the other desperate people battling for an appointment, which in itself is an issue with my mobility problems and lack of transport. (They don't take phone calls for appointments any more). Eventually I got to the front of the queue and asked for an appointment, and the receptionists always makes you declare what is wrong with you in front of everyone, so they can decide whether you are worthy of contact with a doctor or not. I felt too embarrassed to announce I'm going bald and riddled with infection in front of the other people and I had to plead with her to let me see a doctor without telling her what's wrong with me. Eventually she agreed I wouldn't have to tell her, but now they've changed the system so the receptionist can't even book you an appointment. All they can do is add your name to the triage list and at some point during the day a doctor will phone you and decide whether you are worthy of an appointment or not.

This is because the GP won't see people for almost anything now. If you have any kind of muscular-skeletal issue the GP won't see you. You have to refer yourself to the physiotherapist and be on the waiting list for 4 months for an appointment. If you have an infection of any kind the GP won't see you, you have to go to the pharmacy and get antibiotics direct from them. And a whole list of other things they won't see you for but tell you to go elsewhere. According to a news article I read, there is a shortage of 4200 GPs and only 12% of appointments are now fact to face. It's like they make getting an appointment so difficult to put people off even trying. The NHS is absolutely falling apart and it's just another problem that makes life more exhausting and stressful.

Insomnia is like an extra curse. When you're unwell or having an awful life you'd like to sleep more of it away to make it pass faster but the universe says "Akshully....no. I'll make you sleep LESS so you have to endure even more of this shitty, miserable life!"

Hey loves,

I just had to come here and share this amazing update with you all, we did it! We got the full amount to cover my sisters’ hospital bills. Thanks to your support, donations, shares, and kind words, they’re safe in the hospital now and getting the care they need.

I can’t even explain how much this means. It was such a scary time, and you all showed up for us in ways I’ll never forget. Your love and solidarity honestly saved lives, and I’m so, so grateful for this community. 🙏🏿

Right now we’re focusing on helping them heal and trying to find somewhere safer to move so we can start to feel okay again without living in fear.

If you still want to support, my mutual aid link is in my profile but today I just wanted to celebrate this big step forward with you and say thank you from the bottom of my heart. 💜

Seriously, thank you, thank you, thank you.

I am not quite sure where to post this, so I'd prefer to share it with you lovelies. The healing journey is on a good way and while I've had setbacks, it's still going well. However

I got a mail two days back that my storage compartment (for quite literally everything that I own, since I don't have my own apartment atm) "possibly took some water damage". As it turned when I went to check, the only thing that didn't get damaged was my box of memorabilia and books, some of them aren't even available for purchase anymore. While that was a huge load of my shoulders, my entire bed, including the mattresses, is a huge fucking sponge. A couple of other things got damaged too, which leaves me with having saved a box of books and mementos, two boxes of dishes and kitchen stuff, a chair and a cheap footrest. I don't own much beyond that, and it's never really bothered me, but I would've preferred to keep the bed. It was really nice.

I filed a damage claim offered by the company who rents out these compartments and if all goes well, I should get compensation for the entirety of the broken stuff. But, you know, paying nearly a 100 bucks a month for 2 years to store something securely, I'm pissed that it wasn't secure. Not gonna get that money back, and it wasn't even enough to get all my stuff back.

Worst part is that I just feel numb about it. I nearly lost my most precious books and mementoes, and my only reaction was to write the damage claim.

Not so fun fact I learned today! They can reduce your SSI and make your spouse make up the rest if you get married. It even applies to common law marriage. That's just straight up eugenics, but what do you expect from the world's most evil, genocidal, settler-colonialist country in the world behind Isnotreal!

Approaching tasks is so stupidly hard. I can start cleaning the kitchen but then not finish it, even if it would only take me a minute to put something away and a few more to empty the dishwasher. I can take some clothes off of the line, but not all of them. Executive dysfunction is just stupid

My treatment guide book thing that is supposed to be used by students working at the hospital has like a "This would work but don't do it" section of a lot of diseases, and for the somatic diseases its kinda funny, it's basically stuff like giving patients alcohol, cigarettes or illicit drugs for treatment purposes. (Theres also some real treatments with the caveat of "You're not yet qualified to do it" stuff)
The psychiatric portion is a horror show though because it's basically just explaining chemical restraints and how to gaslight a patient.

Given how often the terrible things happen, it does make me wonder if I could get my doctor to score me a speedball and a vodka.

My surgical wound is infected now. Every day brings a new joy. I was hoping to avoid making more mutual aid posts until the end of the month but now I've got no choice, I need to get iodine items to treat this. And my next surgery is on Tuesday so the next lot will probably get infected too. So tired.

i finally told my therapist about having DID and it went pretty well!! she's looking for psychiatrists who specialize in trauma and neurodivergency that would be covered for me, so hopefully that happens sometime eventually

Does anyone have recommendations for jobs that don't require customer interactions? I used to work as a kitchen porter and I liked that, but then I got moved to the bar and I hate that. Being a bartender is exhausting and people are so entitled and rude.

Now my landlady's car is having a problem. We already can barely pay for petrol, I've had to make a mutual aid post for help with the repairs. Another wonder of being disabled - if I could walk more than a few minutes it wouldn't be an issue, I could just walk or get the bus. But the nearest bus stop is half a mile away. When you're disabled every problem is magnified.

I wish people would stop popping off live rounds with the fireworks

Hey comrades, do any of you know or have experience with dating apps for people with disabilities? I'm in my early 30s and have hit the point in my life where I would like to find a life partner. I looked around on the Reddit disability community but y'all know what's up with Reddit users.

I made a post here months ago about how I saw a book I owned being sold on ebay for over £100, so I tried to find my copy to sell, with no luck. It's just happened again. I saw a book I've had since childhood going on ebay for £115, so I tried to find my copy, and I swear I remember seeing it on my bookshelf last year but now it's gone. I did have my stuff moved out of my room temporarily last year as a builder came to fix a damp mouldy wall. Maybe it got lost somewhere while being moved. Why does this keep happening? And how? Two builders carried the bookshelf, with all the books in it, up to the attic and then back down when the repair was complete. It's not up there and I watched them do it, nothing fell off. Things must just dematerialise into another dimension.

why is disability pride month in the hottest month ever cant it be in like fall or something

I'm pretty sure I'm officially in burnout because of work. Last shift, I had a guy take 40 or so stops off of me but still got done when I normally would. Had I not gotten help, I'd have been out until 7pm. That shift was exceptionally bullshit though.

I hate that I've been writing code on and off for 10 years but haven't had a programming job long enough to be worth looking at. I have a portfolio and active github(both linked on my resume) but am consistently getting denied interviews. I just want to make websites because I'm decent at it. But no one local or remote wants to even bother with me. And like, even if I do land a decent paying software job, at this point retirement isn't even an option. I'm now mostly just looking for something that is steady enough to live off of until I die.

I have 4 mobile apps on the Play Store. I have over a dozen websites I've made in the last year, 3 of which are actually live and being used. I'm not sure how big of a portfolio I need at this point to even be considered. I think next week I'm gonna make a fake resume that claims I worked for years at several now defunct companies doing web stuff and see where that goes. Idk. Life just sucks. Ever get the hint that you should just accept your shitty existence for years but still try to ignore it? Not great on your mental health.

Just helped sneak Chinese tourists into a restricted area for a better view. 🤫

Well, after multiple calls and pleading, I finally managed to get booked in with the endocrinologist on 4th August. Although it's a month away, given the state of the NHS and general difficulty of obtaining appointments now, I feel lucky and relieved to be given an appointment at all. They seemed unwilling to give me one until I mentioned my hair is now falling out and then they booked me in. I'm getting my blood tests today so the results will be available by then.

And today the British government voted to cut disability benefits. Just another reminder that we are seen as a worthless drain on society and are blamed for single handedly bankrupting the country.

Trans Sisters Attacked – Need Urgent Help

Hey friends 💙,We were attacked in our camp just for being trans. Our shelters burned, and some of my sisters were hurt. We covered hospital bills, but now we really need help finding a safe place to stay in Juba.

We’ve raised $102 so far, but still need about $700. Any share or donation means the world to us. Thank you for being here. The mutual aid Link is in my profile.thank you for taking time to read this 💙🙏🏿....

Gonna art. Be back in 2 hours.